Every parent's worst nightmare is when a sick child requires immediate hospital attention. The most challenging factor at a hospital's emergency department is often the long waits to be attended by medical staff. As the hours pass, a sick child and parent may become more uncomfortable and distressed, especially when the duration of the waiting time is unknown. Parents quickly need to learn how to navigate the hospital system and to strongly advocate for their child's specific situation. This case documents a mother's experience of her toddler's one-week stay at the Sydney Children's Hospital. The mother is a 35-year-old, full-time professional, holding private health insurance, heavily pregnant with her second child and due to give birth in six weeks. Thandie (the patient) Is a normally bubbly, healthy three-year-old girl, who hasn't visited a hospital since birth.

Friday, 30 March, 8 am. For the last five days Thandie has complained of a sore left knee and it's getting worse. What's wrong with her knee? Earlier this week, three local doctors saw Thandie, and she had a blood test and X-ray of her leg. Despite these tests, none of the doctors could provide a diagnosis. I conducted an Internet search for a possible diagnosis but that just proved more confusing. Thandie's knee was becoming increasingly painful; she

now needed pain relief every three hours both day and night and she was limping. With the weekend fast approaching I decided to drive Thandie to the Sydney Children's Hospital

emergency department in Randwick, which is 30 minutes away from our house. To have the best chance of a diagnosis, | knew that Thandie needed to be seen by a GP who specialized in paediatric health and a bone specialist. I chose to take her to the Sydney Children's Hospital as it has a strong reputation and is closer to my home than the other alternative, Westmead Children's Hospital. | expected to be at the hospital all day sol asked Thandie's

nanny to accompany me for support and | packed Thandie a backpack of food and toys. Thankfully my husband was due to arrive home that evening from his overseas work trip.

We parked in the hospital car park and entered the emergency waiting roomthankfully it wasn't busy. Children's cartoons were playing on a TV and there was a small playground in the courtyard. We were seen by the receptionist within five minutes of arriving and by a friendly triage nurse an hour later. Midday. Thandie's name was called, and we were directed into a nearby room where Thandie was given a thorough check-up by a female paediatric doctor. The doctor was unsure of Thandie's illness so asked us to return to the waiting room while she ran Thandie's symptoms past her peers.

That afternoon, Thandie started having tantrums in the waiting room due to her being in intense pain. Later that afternoon Thandie had a blood test. We were escorted into a nearby room with three nurses and a play therapist. Thandie was asked which hand she'd like the blood to be taken from. One nurse inserted a cannula into the back of Thandie's hand while the play therapist distracted her with nursery rhymes. Once again, we then returned to the waiting room.

5 pm. A nurse appeared and asked whether Thandie would be more comfortable resting in a bed. I breathed a sigh of reliefher condition was now being taken more seriously. We were led through swinging doors into a large open room full of beds with a nurse's station in the middle. As Thandie was settled into a bed my husband arrived and my nanny departed.

Thandie was taken for an X-rayher legs and hips were reviewed. The nurses and my husband were wonderful at keeping Thandie calm and distracting her from the procedure.

As | was pregnant | had to wait outside the X-ray room.

8 pm. We received a visit from the orthopaedic registrar, Dr Hyland. She was personable and said she didn't have a diagnosis at this stage but that we would all work together to get to the bottom of it. | found this statement very reassuring. Thandie was then given morphine for her pain and then officially checked into the hospital to stay overnight.

Dr Hyland advised that Dr Davies, the head orthopaedic specialist, would visit Thandie in the morning.

9 pm. We completed the hospital paperwork and decided to register Thandie as a private patient so that she would be placed under the care of the head specialist. The hospital administrator told us that since we arrived via the emergency department our insurance should cover all the medical costs and we would be unlikely to receive any extra charges. This information was helpful; however, the hospital costs were the least of my concernswe just wanted everything possible to be done to help our daughter's condition improve.

At this point the mother's satisfaction rating was:

Rating of emergency department

Overall satisfaction = 3.5

(Scale: 1 = very dissatisfied to 5 = very satisfied)

In-hospital-ward experience

10 pm. An orderly wheeled Thandie, while still lying in her bed, to an overnight ward called the Peter Pan Ward. The ward's walls were colourful with murals of fairies and magical gardens. A nurse greeted us at the nurse's station and Thandie's bed was wheeled into a vacant corner of the ward. The nurse gave us a tour of the patient and parent facilities which included showing us how to adjust Thandie's bed, fold out the carer's bed and work the TV. We were shown the location of playroom, parent's kitchen and DIY linen area. Thandie could also choose her preferred meals from a daily menu. Normally only one parent is allowed to stay overnight but as | was heavily pregnant they allowed both my husband and| to stay, which we appreciated.

Saturday morning, 31 March. That morning we met and shared stories -with parents in the ward playroom and realised that every child in there had a special story and that the families were going through a similar nightmare to us. Most parents were satisfied with the level of care but advised us to continue to push hard, as it's easy to get lost in the system. We were encouraged to diarise all Thandie's medical procedures. We were expecting Dr Davies to visit Thandie early that morning, but he didn't come. Each hour we asked the nurses when they expected him and we kept being told 'soon, in a few hours.

1 pm. Thandie was now in unbearable painshe would scream uncontrollably every 1.5 hours whenever her pain relief wore off. Also, she would sometimes faint at the peak of her pain cycles. | knew urgent action was required so | begged a supportive male nurse, Stephen, who knew our names well, to find Dr Davies.

4.30 pm. | now felt extremely angry. Dr Davies had not visited Thandie all day and one nurse even commented that he might not visit until Monday. This was an absolute jokehere we were checked into a hospital ward, and we couldn't get a specialist to visit Thandie despite the urgency of her situation. | even video-taped Thandie during one of her pain episodes as proof to email to Dr Davies or any other specialist that we could locate outside

the hospital. On top of this, we felt like we stepped onto an eight- hour ride each time the nurses change shifts. We tried to build rapport quickly with every nurse assigned to Thandie and briefed them on the urgency of providing Thandie's pain relief when needed and that she preferred it in a baby's bottle mixed with a small amount of milk. If the nurses took longer than 15 minutes to provide Thandie with pain relief after she first showed signs of discomfort, she would shake and have difficulty drinking from a bottle. The alternative was a suppository or to force a syringe into her mouthboth of which were met with further tears and body thrashing. We felt that we were in dire Les Misrables territory but

my husband and | kept telling Thandie and each other that soon the pain would pass.

5 pm. Finally Dr Davies arrived. He was supremely confident and | had to control my anger due to Thandie's vulnerable situation. He appeared knowledgeable and said that the nurses had kept him updated on Thandie's situation. However, he needed to collect data from Thandie's tests over the last 24 hours to uncover the underlying cause of the problem. He outlined the plan of action over the coming few days: a variety of tests that he had authorised systematically, each one more invasive than the last, to rule out each potential illness. The first test would be a radioactive body dye. We were told that this test was

unlikely to provide a diagnosis but would pinpoint the exact location of the problem in Thandie's knee/hip. Thandie was wheeled into a nurses' room for a repeat blood test but this time she needed to be restrained in blankets due to her pain levels. The nurses were apologetic and as caring as possible and I could see that there was no other way. At least Dr Davies now had a plan.

8 pm. Dr Davies reviewed the blood tests and authorised a course of antibiotics to be given intravenously (IV) immediately as a proactive measure. I was relieved that Thandie, for the first time, was starting to receive treatment rather than only pain relief.

Sunday morning, 1 April. Thandie was wheeled to the scanning room for her pre- and post-radioactive dye scans. The orderly and nurses were very friendly with one nurse even giving Thandie a pink teddy bear. My husband was wonderful at distracting Thandie and encouraging her to keep still while the dye images were being taken. I felt sad, as I couldn't hug Thandie for the next 24 hours while she was radioactive due to my pregnancy.

Midday. Dr Davies came to our ward with the results. 'Good news', he said. 'We have a diagnosis, it's acute osteomyelitisa bone infection that's fully treatable with

antibioticsone week in hospital through an IV and five weeks orally at home.'

My husband and | burst into tears for the first time since Thandie's arrival in hospitalwith relief. Dr Davies congratulated me for bringing Thandie in early to hospital before the full signs appeared, as the early diagnosis meant she would have a faster recovery rate.

Monday, 2 April. A special children's entertainer, Fairy Sparkle, visited Thandie and made her smile. Also, a Catholic nun visited the ward to offer Holy Communion.

Tuesday morning, 3 April. Thandie coughed a few times and then strangely the head nurse advised us that Thandie would need to move immediately to the infectious diseases ward. It sounded like an overreaction. Naturally, we refused to relocate until Dr Davies personally came to reassure us that it would be a safe and pleasant environment for Thandie.

Rating of Peter Pan Ward

Overall satisfaction with ward and nurses:3

(Nurse Stephen was a 5)

(Scale: 1 = very dissatisfied to 5 = very satisfied)

Tuesday afternoon, Friday 6 April. Thandie's move to the infectious diseases ward was a miracle in disguise. The ward was only half full, had a higher nurse to patient ratio and Thandie had her own room with natural light streaming through the large window. The nurses possessed positive attitudes and reacted immediately to pain relief requests with an average turnaround of three minutes. They allowed Thandie to be unhooked from her IV drip after each antibiotic's injection. This made a big difference to her mobility and general mood. Nurse Stephen came and visited us on his lunch break from the other ward to check on Thandie's progresswhat a dedicated and lovely person. Due to Thandie's cough we unfortunately couldn't visit the hospital's Starlight Express room but enjoyed daily visits

from volunteers delivering bucket loads of free Easter eggs.

Saturday, 7 April. Dr Davies visited Thandie and gave us the go-ahead to take her home. After the care shown towards Thandie during her hospital stay, we wished to contribute a gift to the hospital. We asked the nurse and she advised us to call the main hospital number. We then packed up all of Thandie's personal items including cards, balloons, games, baskets of Easter eggs and drove home.

Rating of infectious diseases ward

Overall satisfaction with ward and nurses = 5

(Scale: 1 = very dissatisfied to 5 = very satisfied)

Epilogue

Monday, 9 April. We drove Thandie to the Sydney Children's Hospital to visit Dr Davies as an outpatient. He was happy with her progress; however, Thandie was still walking with a limp.

Six weeks later. Thandie had another check-up and X-ray with Dr Davies. He was happy with her progress and her limp was less noticeable.

Three months later. We received a letter from the hospital requesting us to sign a form so they could claim funds from Our insurance provider. We signed the letter and didn't receive any bills from the hospital. Thandie can walk normally and appears to have fully recovered.

One year later. On the first anniversary of Thandie's illness, we received a letter from the Sydney Children's Hospital Foundation asking if we'd like to join their mailing list. We

did and gave a donation. Thandie has had no relapses and is a healthy, active and happy little girl.

Overall rating of service experience

Overall satisfaction: hospital = 4, Dr Davies = 4,

value for money= 4.5

Would | recommend this specialist and hospital to a

close friend? = 4

(Scale: 1 = highly unlikely to 5 = certainly recommend)

Questions for discussion:

2 Using services marketing concepts, theories and frameworks, explain why the mother gave the various satisfaction ratings.